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Emily's journey

When they entered the world on July 29, 2002, Emily and twin sister Abigail Sennema appeared to be perfectly healthy babies. Within two days of their delivery, both the girls were discharged home.

But as the weeks went by at home, parents Janette and David noticed that something had changed in little Emily. She was irritable, prone to crying uncontrollably and though she fed frequently, she threw up almost as often and wasn’t gaining weight.

“Emily became ill in September of 2002. After many visits to our family physician and unanswered questions, she suddenly became unresponsive,” says Janette. “We ended up at [LHSC’s Children’s Hospital’s] Emergency Department on Oct. 9.”

There, it was discovered that nine-weeks-old Emily had diabetes and was suffering from a potentially life-threatening complication called diabetic ketoacidosis (DKA).

“At the time that Emily presented in the Emergency Department, she was in a very bad state,” says Dr. Cheril Clarson, Paediatric Endocrinologist at Children’s Hospital. “Her blood sugar level was extremely high. Diabetic ketoacidosis is very dangerous, especially in a baby, and can cause vomiting, dehydration, trouble breathing, coma and ultimately if untreated, death.”

Emily was resuscitated and started on insulin injections in the Paediatric Critical Care Unit (PCCU) at Children’s Hospital. Her parents were educated in management of diabetes by the diabetes team and after two weeks, Emily finally became well enough to go home with the support of the diabetes team. However, even with up to nine injections of insulin a day her blood sugars were still unstable, so Dr. Clarson recommended that Emily change to an insulin pump, which delivers insulin continuously though a small catheter that is changed every three days. When

Emily was readmitted to the PCCU and started on a pump. At only 14-weeks old, she became the youngest patient ever to use an insulin pump at Children’s Hospital.

“It was the first time we saw her sugars stabilize,” says Janette, adding that though the pump was a blessing, it also had its challenges. “As she grew, she would drag it behind her. She even dropped it in the toilet. So, we needed to get a new pump about every three years.”

As she became older, Emily became empowered to care for herself. A trip to a camp for diabetic children taught her how to manage her condition – but a feeling of being different from other children still remained. When she started a new school, her classmates noticed the insulin pump, and thinking it was a game console, removed it from her body.

Then there were snack times and lunch hours.

“I was the only one in my school with this ‘problem,’ ” says Emily. “If it was time to eat I had to leave the class, go down to the office, check my blood sugars, and give myself insulin.”

Little did the Sennemas know, that almost a decade after Emily’s diagnosis, life was about to change dramatically once more. While at a Canadian Diabetes Association Conference, Dr. Clarson had learned of new research showing that some cases of neonatal diabetes were connected to genetic mutations. In these instances, patients had been able to stop taking insulin injections altogether and manage their condition with oral medication. Dr. Clarson immediately thought of Emily.

“Dr. Clarson called our home and was excited to share some new information with us,” says Janette. Dr. Clarson explained to the family that there was a test to see if Emily had ‘neonatal diabetes,’ and she wanted to have a genetic test done with LHSC’s Dr. Victoria Siu, medical geneticist.

“Emily was the first patient we tested for neonatal diabetes,” explains Dr. Siu. “Ten years ago this type of testing wasn’t clinically available. There are many genes associated with neonatal diabetes, but we are now testing two in particular. If a mutation is found, then the patient can be changed from insulin to an oral medication, which makes a huge difference in how they manage their condition.”

When the test result came back a month early showing that Emily did have a genetic mutation, the Sennemas were shocked. Emily was started on the oral medication and gradually her insulin dose decreased until seven weeks later, on Sept.1, 2011, she was able to stop taking insulin injections.

“At first we were in disbelief,” says Janette. “This has been our world for nine years. We have been checking sugars at least six times a day, praying she wouldn’t become ill with any regular illnesses, as this is always hard on her. A simple cold would mean days of getting up at night to check her sugars and ensure she was okay.”

On the day her insulin pump was removed, “It felt like a heavy load coming off of my shoulders," says Emily. “It’s so much better now. I just have to take two pills twice a day.”

Upon reflecting on Emily’s journey, Janette is grateful that her daughter’s story, which started out as a near-tragedy, has come full circle.

“We feel the hospital has saved her life and given her a future that she wouldn’t have had, were it not for the education and resources and research,” she says. “We’ve had so many positive experiences throughout Emily’s life and people who have taken care of her - whether they were from the hospital, the church, family or friends– everyone has come along side with us.”

But even with her new-found freedom, Emily still looks forward to annual check-ups with Dr. Clarson.

“The people there [at LHSC] have been helping me for all these years and I just want to thank them so much for helping me. Dr. Clarson and the diabetes team are like family to me.”

The multidisciplinary diabetes team at Children’s Hospital provides comprehensive care for more than 600 children and adolescents with diabetes in southwestern Ontario.

Children and families are seen in multidisciplinary diabetes clinics held twice a week in the Pediatric Medical Day Unit. Most children and teens followed at the clinic have type 1 diabetes (formerly known as Insulin Dependent diabetes). The number of patients with type 2 diabetes has increased from fewer than five in 2003 to over 30 in 2013, accounting for 5 per cent of the clinic population. There are only three children, (including Emily) who attend the clinic due to neonatal diabetes.

Although insulin provides life-saving therapy, diabetes has well-documented long-term complications that can lead to visual loss, kidney failure, limb amputations, heart attacks, and stroke. Diabetes is the single most common cause of acquired blindness and renal dialysis in the developed world and optimal diabetic control is clearly associated with a significantly reduced risk of diabetic complications.

Insulin pump therapy provides continuous subcutaneous (under the skin) insulin and is the best option for optimum diabetic control and a more normal lifestyle. Our diabetes pump program was initiated in 1999 and has continued to expand each year. Our current patient population using insulin pump therapy ranges in age from less than two years of age to 18 years old and comprises 42 per cent of our total type 1 diabetes patient population.